Developing a screening tool and intervention strategy for elder neglect in persons with dementia in primary care: protocol to use a multistep process

Introduction Elder neglect by both informal and formal caregivers is common, particularly among persons with dementia, and has serious health consequences but is under-recognised and under-reported. Persons with dementia are often unable to report neglect due to memory and language impairments, increasing their vulnerability. Screening for elder mistreatment and initiation of intervention in primary care clinics may be helpful, but few evidence-based tools or strategies exist. We plan to: (1) develop a novel primary care screening tool to identify elder neglect in persons with dementia, (2) develop an innovative technology-driven intervention for caregivers and (3) pilot both for feasibility and acceptability in primary care. Methods and analysis We will use a multistep process to develop a screening tool, including a modified Delphi approach with experts, and multivariable analysis comparing confirmed cases of neglect in patients with dementia from the existing data registry to non-neglected controls. We will develop an evidence-based, technology-driven caregiving intervention for neglect with an expert panel and iterative beta testing. Following the development of the protocol for implementation of the tool and intervention with associated training, we will pilot test both the tool and intervention in older adult patients and caregivers. We will conduct provider focus groups and interviews with patients and caregivers to assess usability and will modify the tool and intervention. These studies are in preparation for a future randomised trial. Ethics and dissemination Initial phases of this project have been reviewed and approved by the Weill Cornell Medicine Institutional Review Board, protocol #22-06024967, with initial approval on 1 July 2022. We aim to disseminate our results in peer-reviewed journals, at national and international conferences and among interested patient groups and the public.